2003 Lead solicitor $5.7 million gift to MGH Brain Tumor Center, establishing the Stephen E.
Pappas Center for Neuro-oncology and Stephen E. Pappas Neuroimaging Research Program,
as well as a nursing research program and grants program

2003 Lead solicitor $5.7 million gift to MGH Brain Tumor Center, establishing the Stephen E.
Pappas Center for Neuro-oncology and Stephen E. Pappas Neuroimaging Research Program,
as well as a nursing research program and grants program

The study of acetazolamide for idiopathic intracranial hypertension described on page 9 of the Spring issue of BrainWaves raises an important question about a neglected aspect of clinical trials: How do investigators obtain funding to study the efficacy of a drug that has no commercial potential?

Only 300 of the approximately 7,000 known human diseases are of interest to the biopharmaceutical industry from the standpoint of prevalence or commercial potential, according to the Office of Rare Diseases Research (ORDR) at the National Institutes of Health (NIH). The Orphan Drug Act of 1983 sought to use patent protection and tax incentives to promote development of drugs for diseases with a small market. In this context, the word “orphan” refers to a condition or drug that has not been “adopted” by the pharmaceutical industry because of limited commercial potential and a rare disease is one that affects 200,000 or fewer Americans. In the twenty years following enactment of the ODA, 249 orphan drugs received marketing authoriza¬tion, compared to 10 in the preceding decade, with the most notable being Amgen’s erythropoietin.

Commercial potential alone does not determine value

Low prevalence does not equate to limited commercial potential, of course, because pricing must also be considered.

Over 2,000 people arrived at the Seattle Center’s Mural Amphitheatre on Saturday, June 26th to show their support in raising awareness and finding a cure for brain cancer. There has been over $426,000 raised and the numbers continue to climb.

These organizations are now working together using groundbreaking research and integrative patient care, to find a cure. This progress brings hope to families, friends, and the 22,000 Americans - 1,200 in the Pacific Northwest - who are diagnosed with a malignant tumor each year. If you would like more information on how to donate, please contact Davida Pennington at 206-320-3629.